A Simple Hug

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts.

A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, the more hospitalization, the more antibiotics, the faster we grow resistant. Even with all of today's medication some bugs take permanent hold.

This is why we have no in-person support groups. However, not too long ago I had a friend from out East visit Andrew and I. He is a huge advocate for the CF community (as someone who knows others with CF, but doesn't have CF himself). I realized after he left that for the first time in life, I discussed CF topics and talked about CF friends with someone face-to-face. Someone who knew what I was talking about and has similar group of online CF friends. It was so neat being able to talk about this part of my life. Yes, I talk about CF to my family and non-CF friends face-to-face. But, they don't know any of my CF friends, so it's a very one sided conversation. So seeing my friend on Saturday was not only fun, but a new experience for me.

Now some with CF choose to date and/or hang out with others with CF. If both people are okay with the risks- then that is up to them. I'm not judging, CF is tough to deal with every day and we each know we have different views on the "6 foot rule." Everyone knows whats best for them. I choose to not break the CFF's 6 foot (outdoor) rule and try to avoid most indoor function where others with CF will be. I do attend a couple BIG events that have 1-2 others with CF present, but we steer clear of each other. Not breaking the rule is HARD. But my childhood is a constant reminder of why the rules are there. A lot (almost all) of my childhood friends with CF have passed away. Sadly, we didn't know about cross infection of superbugs when I was little. So many from my clinic spread the bacteria to others and couldn't get their health back. When I was little before this knowledge, I'd spend summers with my CF best friends, stay at their houses, they'd come visit me. We went to summer camps and hung out in hospitals together. It made having CF way less scary and lonely. It was when I was 12 years old I was told to not be around my friends anymore. Sadly, most passed away between the ages of 10-20. I lost touch with a couple, but it was hard cutting off my friends. Internet was not as well used and many of us had no way of communicating other than phone calls. By the time I was in my mid-twenties I had over 15-friends pass away (5 of them being my best friends). I didn't share much of this loss with my friends in school. I kept it all to myself. But, it was the hardest thing I ever had to deal with and it may have made me a little overboard with germs and cross infection rules.

I had one friend that managed to not contract some of the worst bugs and we stayed close for years! Laura passed away in 2014. That was the hardest loss, we had been through so much together. She was 32 and I was 29 years old. Losing her wasn't the only difficult part. Not being there to hold her hand, to hug her, to be with her as she struggled to breathe. She had been under 20% lung function for a long time and was denied twice for lung transplants. She knew she was dying. She was scared and the best I could do was talk to her over the phone or via skype. I felt I wasn't doing enough. Guilt, uncertainty, and sadness- these are major emotions we feel often.

Since Laura's passing, I have been reluctant to let anyone else with CF too close. I'll facebook back and forth, but I don't really do phone call or skype anymore. Maybe at some point, since I do have some CF online friends I'd love to get to know better. But, I am thankful that the CF Community has such a large presence on social media. It's only form of communication and support in most cases. Support is SUPER important, thankfully its something being looked into more. More online support groups are being started. Lack of support may be part of the reason for such high increase in mental health (mainly anxiety /depression) among CF individuals. (Note: I do deal with minor anxiety, but not depression.) But, I think the emotions that come from this lack of close contact with others are very common and very real. It's also a topic I don't see discussed a lot.

I didn't share about cross-infection for sympathy or pity for people with CF. I just want people to be aware of it and I'm always shocked to see how many people had no idea of this area of our lives. It's one of the most difficult aspects to CF and It affects all of us. I hope for a cure, not just medication that keeps us stable (although I'm glad for that too). But, I want an actual CURE so that one day we may be able to hangout and share our stories IN PERSON!